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Old 04-09-2010, 05:04 PM #1
Jaimee Jaimee is offline
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Hi all! My name's Jaimee. I'm in the process of being checked for Myasthenia Gravis after 3 yrs of misdiagnoses, theories and assumptions. I go to the Neuro Monday and really have no idea what to expect, but I'm hopeful for answers. I'm a mom of 4 little ones and this has been a struggle. I think more than the weakness, trouble and sometimes even pain, I struggle most with people not seeming to believe that I'm having trouble! I guess because they can't always see my weakness or difficulty or because they haven't seen me at my worst... I am wrestling with my attitude right now because I would love to just rub it in everyone's faces when I finally do get a diagnosis. But more than anything, I want to feel better and stronger and more able to care for my family and follow through with the things that I'm passionate about.

Anyway, I'm wondering-- What can I expect from my first appt. with the Neuro? It's been 2 years since I've been to a Dr. and the last round eliminated MS, Meniere's disease, fibromyalgia, lyme disease, and chronic fatigue syndrome... but brought up the question of Hemiplegic Migraine (w/o head pain)-- I know! Crazy!

If I am not in horrible shape at the time of my appt, will she still be able to do all the tests or whatever is necessary to find an answer? I have been in kind of a chronic state of low level symptoms (following a more severe exacerbation) since the beginning of March when I had a head cold, attended a birth as a doula and then allergy season hit hard and heavy. My biggest fear is that I will get in there after all this waiting and hoping and still have no answer. No way of coping.

If you read this all the way through, thanks. I can be long-winded. And I am a bit anxious about what the outcome of this appt. will be. I thought maybe to be amongst people dealing with some of the same issues may be helpful.
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Old 04-09-2010, 06:27 PM #2
Stellatum Stellatum is offline
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Hi, Jaimee, and welcome! Boy oh boy, do I ever know how you feel. It has meant so much to me just to be taken seriously, and my biggest fear has been that the doctor would conclude that it's "all in my head."

I was surprised to hear you were tested for Meniere's. I thought for a while that that's what I had, because I was having trouble keeping my balance (though I never had vertigo). It took me a long time to understand that my tiltiness was due to weak side and back muscles. I start tilting at the waist, and have to sort of stagger so as not to fall over, especially while walking. This isn't really ataxia, or disequilibrium, as I am my doctors had thought; it's just weakness of the muscles that hold you upright.

I hope some of our really knowledgeable members can answer your questions about what to expect from the neurologist, and whether the tests will be accurate if you're not in the middle of a real flare-up.
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Old 04-09-2010, 06:55 PM #3
Jaimee Jaimee is offline
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Originally Posted by Stellatum View Post
Hi, Jaimee, and welcome! Boy oh boy, do I ever know how you feel. It has meant so much to me just to be taken seriously, and my biggest fear has been that the doctor would conclude that it's "all in my head."

I was surprised to hear you were tested for Meniere's. I thought for a while that that's what I had, because I was having trouble keeping my balance (though I never had vertigo). It took me a long time to understand that my tiltiness was due to weak side and back muscles. I start tilting at the waist, and have to sort of stagger so as not to fall over, especially while walking. This isn't really ataxia, or disequilibrium, as I am my doctors had thought; it's just weakness of the muscles that hold you upright.

I hope some of our really knowledgeable members can answer your questions about what to expect from the neurologist, and whether the tests will be accurate if you're not in the middle of a real flare-up.
Do you know if nausea and vomiting can be part of MG? When I first got sick, I woke in the night after having taken a muscle relaxer (I was having some back pain) with horrible vomiting and feelings of vertigo. When I woke the next morning I could barely move my left arm and leg. It felt like there were weights hanging from them. I continued with symptoms for about 6 weeks. It doesn't happen often anymore, but I do experience feelings of queasiness and disequilibrium on occasion and even sometimes an unexplained bout of vomiting... It's strange because I'll think I have a horrible stomach virus, but then nobody else in the house gets sick and I continue on with muscle weakness, etc. Who knows? Maybe this won't be the answer either, and if it isn't, I think I need to just be done with the doctors. I just get frustrated to have no way of explaining or dealing with it all.
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Old 04-09-2010, 09:40 PM #4
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Hi, Jaimee. Welcome to the forum.

I'm sorry it's taking you so long to find answers. Not surprised though!

You didn't really say what your symptoms are. Can you? MG is all about muscle weakness that gets worse with activity and better with rest (relatively). Ptosis (toe-sis) is drooping eyelids from muscle weakness. People with MG often have double vision (DV) because their eyelid muscles don't focus properly due to the weak muscles. If you have DV, it will go away when you close one eye (with MG).

Muscle relaxers are a big no-no with people who have MG. Our muscles are already weak. Muscle relaxers make muscles even weaker. So that fits an MG picture. Make sure the neuro knows what happened after you took this drug.

Muscle relaxers often make people nauseated. Any feelings of being nauseous are not MG-related. Any stomach problems are usually not MG-related. Though you need acetylcholine (ah-seat-ill-co-lean) to make stomach acid. A stomach can be upset if you don't have enough stomach acid. Have you seen a gastroenterologist for the stomach upset? Have you been tested for celiac disease?

You may have more than one thing going on, which is not uncommon in people with autoimmune diseases. I have MG and celiac disease.

A neuro appt. usually starts with general questions like what are your symptoms, how did they begin. I would mainly stick to the weakness issue. If you bring up the nausea, etc., and make it a central issue, it may confuse things. Obviously you need to mention it but, like I said, it is not a symptom in MG. Then they usually do a clinical exam, which will include things like pushing against their hands/arms with your legs/feet and arms/shoulders/hands and your neck. They'll check reflexes and sensations, with that tickly little metal tool they have! They may have you walk heel to toe or walk back and forth to look at your gait and look for signs of weakness. I had a doctor only once have me sip water (good doctor). When someone with MG does anything repetitively, like drink, their muscles get weaker.

And then there is the "upward gaze" test. You keep your head still and look upward with your eyes only. Try that at home. Look in the mirror first at your eyelids and the opening of your eye. Then do the upward gaze for about 30 seconds - if you can last that long. Then look in the mirror again. Notice anything different? MG is all about fatigable weakness. Maybe you could do that and have someone take before and after photos at the same angle (from the front). You might be amazed at the difference.

Then the neuro will probably order the Acetylcholine Receptor Antibody Panel (binding, modulating and blocking antibodies). Hopefully they will also order the MuSK antibodies. They may ask if you've had a chest CT and may or may not order one. I would put off being radiated until you have a positive antibody test and/or and EMG. They will often do a repetitive nerve stimulation test (RNS) and a regular EMG. The best doc/MG experts will make sure you have what's called a Single Fiber EMG. Have you had any EMG's?

So that's about it. I hope the appt. goes well. Is it in the morning? Getting less sleep will wear out someone with MG. Walking up and down stairs will too. Being hot makes MG worse. Just don't try to get so worse that you can't walk!

Good luck with the appt.

Annie
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Old 04-09-2010, 09:46 PM #5
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Thumbs up Hello Jaimee

Welcome to NT ! Lots of wonderful caring people here

I truly understand your frustration with everything you've said!
I'm sorry that I'm not very familiar with your particular condidtion.......but would recommend taking with you to your appt any previous testing you've had done.

You'll get better feedback from folks who know more about your condition.
I just wanted to stop by and give you a because I know all too well how frustrating it is trying to get people to really LISTEN to what you are saying!

My prayer is that your current Neuro will take a good long look at your history of this illness and the tests you've already had. He needs to HEAR your frustration and what this is doing to your life......rather than just speculating from test results. REAL doctors LISTEN to their patients!!

Truly Caring
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Old 04-09-2010, 10:28 PM #6
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Hi Jaimee,
Welcome! Many of us can relate to the anxiety your feeling regarding your upcoming appt. Consider having your significant other or a close friend or relative accompany you to your appointment. It's good to have another set of ears to hear things that you may miss, and to help relay important information that you might forget. And it's great to have a "note-taker."

I wish you the best with your appointment!
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Old 04-10-2010, 07:13 AM #7
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Thanks guys!
Well I'm not sure about the nausea. It doesn't happen often. Perhaps it is low stomach acid or something. That is definitely not my main concern.

After I had my fourth child I was diagnosed with Bell's Palsy. My eyelid and mouth droop were not noticable to anyone else, but it was so bothersome to me. It felt like I had tiny weights attached to the corner of my eye and mouth. They were very heavy and felt better in the morning and got worse as the day wore on. It lasted for about 2 weeks and then pretty much went away.

It was about a year later when I was working on sign language with my 2 yr old that I noticed I couldn't tighten my left fist as tightly as my right. I thought it was weird, but didn't really worry about it. A week later is when the bizarre waking up without the use of my left side happened. It was so strange. I could walk, but I dragged my left leg and had a hard time doing anything with my arm. It spread to include my right side by the next day and then a few days later, both arms were driving me nuts. I felt like someone had laid a lead blanket across both forearms. I couldn't wash or dry my hair or shave my legs... It was horrible. And I hesitate to use the word "pain" but it can be almost painful. I describe it like when you are lifting weights and you get to that last repetition and you want to just hold it there and get your maximum workout for that last moment... that feeling... sort of almost a burning, overuse of your muscles feeling. Anyway, at the time (this was 3 yrs ago) the Dr had no clue what was going on, I called him frantic over the weekend when my arms started like that (I had already had a head and neck CT) and he said I don't think this will help but I'll call you in some prednisone and we'll see what happens. Oh, it was marvelous! I felt so much better that same day after starting the prednisone. It didn't make it all go away, but the "pain" was gone almost instantly and most of my other symptoms improved rapidly as well. Over the course of 6 weeks it gradually subsided and though I felt weaker overall than I had beforehand, I felt much better for a time after that.

I've had probably 3 more severe episodes like that since that time. Periods of weeks at a time like that. But I have milder versions of those same symptoms almost constantly. Sometimes I will go a few months and feel pretty normal! I love those times. Those are times I can exercise lightly, get all my housework done, pick up my 3yr old in my arms... Normal stuff! But then there's the rest of my life. Not so great. Seems like every time I get a cold or the flu or even allergies... it just sets off whatever this is and it takes so so long to get back to normal. And sometimes it just seems like I get to a "new normal" where I know I am stronger, but definitely not as strong as I was and it just stays at that level for awhile.

I have had episodes of brief choking. I get slurred speech as well when I am having an "episode." My neck frequently bothers me. I can't even really explain that... I used to think it was a fullness feeling in my neck, but it feels better if I bend my head down forward, so I think it may just be that it is week and arching backward? Seems like I go through times where I cough alot in the evening and my voice will be hoarse. This may sound stupid and maybe it has nothing to do with anything, but I sing, and when I'm not feeling well my singing voice is weird... nasal... and I feel like I can't hold my vibrato or make my voice full from my gut like I normally can...

I also have vision issues off an on. Mainly difficulty focusing. I just don't read much when I'm not feeling well. I have had trouble driving as well at times because I will think I see a car backing up in a parking lot, but it's actually not... I think that's one reason I thought there was something related to my equilibrium going on when this first started. I'm just not sure anymore.

I think I will try that eye test at home. I am curious. My Neuro already has a detailed record of everything that has happened because she is the same one I went to 2yrs ago when I pursued a diagnosis of SOMETHING the last time! So hopefully that will be helpful. She diagnosed me with hemiplegic migraine (w/o head pain) then and put me on Topomax (an antiseizure med) and it made me so much worse that I stopped it after a month and never went back. My appt. this time is in the late afternoon. Oh and she has done a head and neck CT but not one specifically for my chest... Will they do that do you think? or can you see the thymus on a neck CT?

I think everybody was confused that last time around because it does seem like my symptoms are all willy nilly with the perceived vertigo and balance issues... I'm just starting to wonder if maybe I misinterpret those things and maybe those symptoms that seem to not match might be rooted in something else...
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Old 04-10-2010, 11:37 AM #8
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So does anybody know if the antibodies will show up regardless of how good/bad I'm feeling at present? I was just curious if it is only accurate when I am at my worst or if it remains pretty much constant in your system either way?
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Old 04-10-2010, 11:46 AM #9
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Smile MG Symptoms

Hello!

With the exception of the nausea and possibly the pain, it sounds like you have MG.

All of these you described are things I have had and are definite symptoms of MG: eyelid and mouth droop with heavy feeling, hand and arm and leg and neck weakness, choking, slurred and nasal speach, vision problems. As far as I know these are classic symptoms.

Pain and balance problems are not directly associated with MG, but can be caused by weak muscles. Often I strain my muscles because they are weak and then later they hurt, but this pain is not directly caused by MG.

Make a list of your symptoms to bring to the doctor.

There are lots of supportive people here. Let us know how you are doing.

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Old 04-12-2010, 05:55 PM #10
Jaimee Jaimee is offline
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Well. I went to my appt today. Pretty much waited for 2 hrs just to go in and be told what tests she's ordering. She's checking potassium, magnesium, calcium, thyroid, acetylcholine antibodies and head/neck MRI. I have to go back in the morning to have the bloodwork done because the blood lady had already gone home by the time I got out.

She said she didn't think it would be MG because I don't wake up feeling "normal" in the morning and then just get worse toward the end of the day? I don't know. My mom (a nurse) said it doesn't always present that way and that it can be normal to have periods of worse/better that can last for weeks at a time like I do. Who knows?

The Dr even said something about the possibility of a "lump diagnosis" Fibromyalgia for when they don't know exactly what's going on... I don't know about anyone else, but I don't want a "lump diagnosis." Especially for a pain disorder when I rarely have any pain! Argh. I'm a mite bit frustrated right now.
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